Introduction to Prof Coyne event at Stormont
•Download as PPTX, PDF•
1 like•917 views
I gave a short talk prior to Professor Coyne's presentation at Stormont on 9th February 2016. Here I explain some of the background of the PACE trial, ME treatments, and the Northern Irish situation.
Recommended
Recommended
More Related Content
Viewers also liked
Viewers also liked (11)
Similar to Introduction to Prof Coyne event at Stormont
Similar to Introduction to Prof Coyne event at Stormont (20)
Recently uploaded
Recently uploaded (20)
Introduction to Prof Coyne event at Stormont
- 1. Hope 4 ME & Fibro Northern Ireland Today:
- 2. Our Speaker: Professor James C Coyne PhD “The scandal of the £5m UK PACE trial for ME: What can be done?” Twitter: #PACEni Video recording sponsored by Irish ME Trust Events: 7th February Patient Event Belfast Castle 3-5pm 9th February Health Decision- makers at Stormont
- 3. Hope 4 ME & Fibro Northern Ireland All committee members are patients We rely heavily on our healthy helpers. The group was set up by Joan McParland Her enthusiasm and commitment to the needs of patients is phenomenal . . . Joan introducing Prof James Coyne at Belfast Castle on Sunday 7th February 2016
- 4. What is ME? Myalgic Encephalomyelitis is recognised as a neurological disorder by the World Health Organisation (section G 93.3 of ICD10)
- 5. What is ME? Main Symptoms: • Post Exertional Amplification of all Symptoms – a delayed reaction to exertion is possibly the defining feature of ME • Intractable fatigue of 6 months or more • Unrefreshing sleep, pain, and memory issues
- 6. How Severe can ME be? • Mild Still working but sleeping all week end. No social life. • Moderate Unable to work, but self caring at home. • Severe Housebound and bedbound. Need help with all but most basic activities of daily life. • Very Severe Completely bedbound & helpless. Light and sound intolerant.
- 7. What treatment does the NHS offer? • Graded Exercise Therapy (GET) & • Cognitive Behaviour Therapy (CBT) Both therapies are based on the biopsychosocial premise that ME patients have false illness beliefs
- 8. Hope 4 ME & Fibro Northern Ireland The PACE trial cost £5 million It has been used to promote: Graded Exercise Therapy and Cognitive Behaviour Therapy as treatments for ME Patients do not agree!
- 9. An ME Association Survey shows: 74% of patients who have done GET report worsening symptoms! ME Association Survey: http://www.meassociation.or g.uk/2015/05/23959/
- 10. PACE trial is scientifically flawed Problems include: • Author conflicts of interest • Altered recovery criteria • Subjective outcomes • Statistical problems and more
- 11. PACE trial is scientifically flawed Also: PACE authors refuse to release their supporting data
- 12. NICE Guidelines for ME are inadequate! Yet they remain on the “static list”
- 13. The Situation in N.Ireland There are an estimated 7000 ME patients in Northern Ireland for whom there is no NHS specialist consultant physician.
- 14. Our GP survey shows: • diagnosis uncertainty amongst GPs • a need for a consultant for diagnosis Training of new GPs • ME is not specifically covered The Situation in N.Ireland
- 15. The Situation in N.Ireland Hope 4 ME & Fibro NI are actively campaigning for a dedicated consultant physician led clinic for ME based on sound biomedical principles.
- 16. Hope 4 ME & Fibro Northern Ireland In summary: PACE trial unscientific GET & CBT cause harm NICE guidelines need review Serious funding for real biomedical research is urgently needed Thank you for your interest today